A note to parents near the start, from someone a little further along.
There is a moment that arrives for many South African families, and almost nobody sees it coming.
Your child is eighteen. They have been accepted to university. They will need some accommodation to write their exams fairly, whether that is extra time, a scribe, a separate venue, or permission to type. So you approach the university’s disability unit, and they ask you for documentation.
Not a diagnosis. Documentation. The educational psychologist’s report, and the one before that. The record of what the school actually put in place, and when. Evidence that this has been true for years rather than something that appeared at the end of Grade 12. Universities will ask a student to bring across whatever they were granted at school, which means someone must be able to produce it.
And here is the second part, which lands harder than the first: your child is now an adult. The unit registers them, not you. They sign the forms. They disclose or choose not to. You can sit beside them, but the responsibility has moved across the table.
I am a parent of a child with additional needs, and I did not think about any of this when my child was small. At eight, you are not planning for eighteen. You are getting through the week.
What nobody tells you at eight
What makes this journey difficult is not a single obstacle. It is that you cannot see the obstacles from where you are standing. You solve the problem in front of you, your child grows, the ground shifts, and a new problem appears that you had no way of anticipating.
Here are a few of the things I have learned:
A diagnosis on its own often isn’t enough. Many parents assume that a formal diagnosis is the key that unlocks support, and that once you have it, the hard part is behind you. When it comes to formal concessions, whether at the end of school or beyond it, the diagnosis is only the beginning of the application. Assessment bodies in South Africa generally want to see a picture built up over time: a psycho-educational report, yes, but also school reports going back, samples of your child’s work, comments from several subject teachers written independently, and reports from the therapists who have been involved. Provincial education departments will also ask for proof that the school itself intervened, through the support processes it is required to follow. A diagnosis tells them what your child has. The rest tells them how it has affected your child in the classroom, year after year, which is what they are actually assessing.
Reports have a shelf life, and the old ones still matter. The psycho-educational report you paid a great deal for when your child was nine will not be accepted as current evidence when they are sixteen. Most applications require a report that is no more than two years old, so you will be paying for an assessment again at exactly the moment when school fees and university applications are at their heaviest. That does not make the earlier report worthless. It becomes something else entirely: proof that this is long-standing rather than convenient. Its value is the date on it, which is unfortunate, because that is usually the report that has gone missing.
The evidence is made of ordinary, forgettable things. When you read what assessors are looking for, it is oddly domestic. Handwriting that falls apart as a test goes on. Work that is never finished in the time given. Reading that is accurate but slow. Homework that takes three hours when it should take one. These are the details that teachers describe in their comments, and those comments carry real weight. At the time, they arrive as a passing remark at a parents’ evening, a message on WhatsApp, a note at the bottom of a term report. Ten years later, they are exactly the evidence you need, and you will have no memory of who said what, or when.
At some point the file stops being yours. We tend to imagine this happening at eighteen, but in South African law the shift begins earlier. A child of twelve who has the maturity to understand what is involved can consent to their own therapy and medical treatment. From that point on, you are increasingly in the position of supporting a young person’s decisions rather than making them. By the time they are applying for university accommodations, support at work, or anything else that requires them to explain their own history, they need to be able to hold that history themselves. Handing over a box of loose paperwork and a decade of things you happen to remember is not much of a handover.
Support and money are attached to paperwork too. If you claim disability-related medical expenses from SARS, that rests on a form completed by a practitioner, which must be renewed on a schedule. If your family receives the Care Dependency Grant, it ends on your child’s eighteenth birthday, and the adult grant is a fresh application in your child’s name with a fresh state medical assessment, so you need to start it months in advance. None of these systems talks to each other, and none of them will remind you.
And every new person starts from zero. This is the one that parents raise most often, and it is not about paperwork at all. A new teacher each January. A therapist who leaves the practice. A school that keeps its records in three different places and then cannot find the one you need. Each time, you sit down and tell the whole story again from the beginning, and each time a little of it is lost, because you are summarising eleven years into twenty minutes with someone who has thirty other children to think about. You become the only complete record your child has, held mostly in your head, at the exact stage of life when you are the most tired you have ever been.
There is a version of this that works.
This can all sound like an argument for treating your child as an administrative project, and that is not what I am describing.
The reason to keep a real record is that it is the only way your child’s story stays theirs. Everything else that holds information about them holds a fragment: the school has its version, the OT has hers, the paediatrician has his, and each one is partial and eventually gets archived, lost, or handed to someone new. The complete picture only exists if somebody keeps it, and the only person with both the standing and the motivation to do that is you.
That is why we built Dalza the way we did. It is one place where your child’s complete profile lives, owned and controlled by you as the parent, holding the reports and the assessments alongside the ordinary observations that turn out to matter down the line: what a teacher noticed in Grade 3, what worked in therapy and what did not, how long homework actually takes. Everyone who works with your child can see the same picture instead of the fragment they happen to hold, which means you stop repeating yourself. And when your child is old enough to carry it, it goes with them.
We hear one thing from parents more than anything else, and it is almost always some version of the same sentence: “I wish I had this years ago.” You can absolutely start when your child is fourteen, and it will still be worth doing. It is simply worth more when you start at six, because the record you are building is made of the years you have not lived yet.
You cannot know what is coming. You can make sure that when it arrives, you are not trying to reconstruct a decade from memory.
About the author: Robby Coelho is a data privacy lawyer and the parent of a child with additional needs. He founded Dalza (dalza.com), an award-winning, parent-controlled platform that connects parents, educators and specialists around the child, keeping their information, learning journey and support needs up to date and managed in one place.
